What an interesting week at the NCI spa! I ended up spending all of last week there. Although I was admitted to a “hospital”, I never felt like I was being treated like a “patient”, I rather felt like I was treated more like a “guest”. I feel like the rules were a bit more “looser” than in a regular hospital and thankfully for me, given the protocol that I am on, they did not have to monitor me all day and all night long so I could at least get a “good” night sleep without being woken up every couple of hours to have my vital signs checked.
My week started off with a liver biopsy. About one month ago, I had the Y90 procedure done on my liver and it turned out that 1 (maybe 2 spots) had not been been hit by the radiation beads making these spots the only candidates for the biopsy and of course, the one that was for sure still alive was the trickiest one to get to. This spot was up high on the left side of my liver, close to my heart. I think by now everyone knows how much I adore my “Dr. D” and I would have trusted him in heart beat to perform this biopsy. I didn’t have the choice in using one of the NCI interventional radiologists. I actually tried to find out which one would be performing the procedure so that I could “google” him ahead of time but I was told that I would get “whoever was on call”. I really think that NCI attracts top notch researchers but I wasn’t sure about their medical doctors. Having had worked in a State Hospital where most of the doctors were not stellar doctors, I must admit, I was a little worried. Monday morning I was wheeled into the radiology department and met with my assigned IR. As I was sitting in my little gown with a warm blanket over my shoulders, he started reviewing my case in complete silence. When he seemed like he had devised a plan of action in his mind, I asked him if he had seen the pictures Dr. D. had sent with the 2 spots circled to help them identify which spot to biopsy. This was news to him and he started paging all the doctors on my research team who were all attending the big ASCO meeting in Chicago. Finally, he just flipped through the pages on the clipboard with my information and the pictures were right there! He stared at the pictures for a while and started opening my last 2 scans on the multiple monitors in front of us trying to zoom in and see the spots more clearly. I could see he was scratching his head and I started really missing Dr.D.! After a while, he came up with the following plan: he would first start with a fine needle biopsy to extract cells from the tumor. He would then have the lab people stain the cells right then and there in the procedure room and if it was cancerous then he would perform the “core biopsy” to extract more tissue. I thought that was a good plan and that got me reassured! Everything ended up going well and other than pretty intense pain for a couple of days the rest was uneventful and I was pleased with Dr. C.!
The next day I was scheduled to get the study drug, a simple little injection in my belly. Before I received the study drug though, tons of labs had to be drawn. I have had my infusion port for 3 years now and have never had any issues with it. Of course, the day that I needed it the most (they had to take blood every 2 then 4 then 8 hours) it stopped working! My nurse was ultra patient, tried different strategies and at some point, got it to work but the blood was practically coming out drop by drop! It took forever to collect all the blood they needed but she was super patient and never complained. She was able to make it work again after letting a solution called TPa sit in the line for a few hours to “declot” it, kind of like Drano for your household drains! I was so grateful that she got it to work again as my arms were getting tired of getting poked.
My doctor had told me that it would take a couple of days for any of the side effects to appear but the very next day, I started having a pretty intense headache and then I started feeling feverish with chills and hot flashes. He even made sure I didn’t have any infection going on as he thought it was “too soon” to have side effects. Those side effects continued and intensified and then I started feeling achy all over, pretty much like when you have a bad flu. By Saturday I was feeling better and felt confident that I could make the trip back home fine and I did. I was so happy to be home, to see my boys, my husband, and my 2 nieces who came down from Quebec to help with the boys. Interestingly, that night, I spiked a fever and had one of the worst liver pain I had. Liver pain can refer to the right shoulder. This has something to do with nerves sending wrong signals to the brain, giving misinformation about where the pain is originating from. I have experienced that referred shoulder after certain liver procedures in the past, it is a distinct type of pain so I have learned to know what it is when it strikes. By Sunday, the pain in my shoulder was so intense that I could barely get out of bed. I pretty much rested all day and woke up Monday feeling surprisingly pretty good. I got in touch with my team at NCI and told them about the pain I had had and requested to have a liver panel done when they would do the blood draw today. Oh yeah, did I mention that I had to go back to DC today (Tuesday) JUST for a blood draw!!! I guess this is a specific type of blood draw that needs to be processed in a very specific way so I could not have it done locally! My doctor responded right away, they were already planning on checking the liver and I like that he was super proactive and said that if the pain continued or came back, that he would like to get another CT scan but since I was fine yesterday, we decided not to do it. I think this pain is very unusual for this study drug but I have my own hypothesis. As I mentioned in my last post, the study drug binds to necrotic tumor cells. Given that I just had the Y90 procedure, chances are that there are a lot of dead tumor cells in my liver. Both my doctor and I had the same thought, that having had this procedure might boost and enhance the effect of the study drug. So if you ask ME, this pain is super positive, it means that the drug is working!
So here I am in DC, just waiting for the shuttle to take me back to the airport. I will be coming back again next Tuesday for more blood work and then I’ll get a week break until injection #2 in July.
Keep on keeping on…